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Batten Disease | Living With Childhood Dementia
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“It’s Dr. Emily’s relentless effort to stop Batten disease in its tracks that’s given our daughter a quality of life we didn’t think was possible when she was first diagnosed. I just want to hug her every time I see her.” - Tayla’s Mom
Dr. Emily, as she is she known to her patients and families, is Dr. Emily De Los Reyes, director of the Nationwide Children’s Batten Disease Center of Excellence. It’s here that Dr. Emily and her team are bringing new hope to families who were once told that Batten disease, a rare genetic disorder, would leave their children blind, bedridden and suffering symptoms of dementia. One of only four centers of excellence in the United States, Dr. Emily oversaw the US clinical trial site that led to the first treatment ever approved for Batten disease. Enzyme replacement therapy delivered directly to the brains of children with CLN2 Batten disease has proven to significantly halt the devastating deterioration caused by disease.
“I always told parents this is a brain disorder that will result in the early death of your child and that you may see your child melt before your eyes. Now, I can tell them that we have a treatment. Or maybe even a cure if children get the treatment before they lose function.” - Dr. Emily De Los Reyes
Dr. Emily, as she is she known to her patients and families, is Dr. Emily De Los Reyes, director of the Nationwide Children’s Batten Disease Center of Excellence. It’s here that Dr. Emily and her team are bringing new hope to families who were once told that Batten disease, a rare genetic disorder, would leave their children blind, bedridden and suffering symptoms of dementia. One of only four centers of excellence in the United States, Dr. Emily oversaw the US clinical trial site that led to the first treatment ever approved for Batten disease. Enzyme replacement therapy delivered directly to the brains of children with CLN2 Batten disease has proven to significantly halt the devastating deterioration caused by disease.
“I always told parents this is a brain disorder that will result in the early death of your child and that you may see your child melt before your eyes. Now, I can tell them that we have a treatment. Or maybe even a cure if children get the treatment before they lose function.” - Dr. Emily De Los Reyes
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